The Lonely Grief of Losing a Loved One to Dementia

The grief involved in seeing a loved one lose his or her capacities to Alzheimer’s disease and other dementias is among the most difficult we can experience.   One experiences the ongoing day-to-day horror of witnessing a loved one slip further and further away.  There are myriad other losses faced by a spouse or partner as their loved one slips into dementia:  the loss of couple activities, the loss of friends who are uncomfortable with the situation or don’t know how to respond, the loss of one’s hopes and dreams for the future and growing old together.   You just don’t know where you fit in any more.  The day your beloved stops recognizing you is among the most painful on this journey.

All of the experiences of grief identified by Elizabeth Kubler-Ross confront a couple after a diagnosis of dementia.  Shock and denial are common — many people faced with this terrible diagnosis hope against hope for a quick cure or hope that the diagnosis was wrong.  Anger is a major component of the process, and can either tear the couple apart or bring them together at the beginning stages of the disease process as they forge a new relationship in uncharted territory.  Depression is certainly a risk in going through the inexorable, seemingly never-ending grief of living with a person with dementia, as well as for the person with dementia as he or she loses their independence and daily functioning.  Guilt is also common — often a loved one feels guilty going on with and enjoying his or her life.

The following are some suggestions for self-care for those living with a loved one with dementia:

  • Allow yourself to feel your anger and use it productively.  This can be a time of deep questioning of one’s religious and spiritual beliefs.  Talk about those questions with friends and clergy.  This “dark night of the soul” can ripen into a deeper spiritual strength, which is an invaluable inner resource in the grief process.
  • Express yourself — journal, write poetry, draw or paint, dance or move to yoga.  Getting those churning feelings out, i.e., “ex-pressing” them, is vital in preventing depression and burnout.
  • Speaking of burnout, take time for yourself.  At first you may feel guilty.  However, nourishing alone time — walking in nature, in a yoga class, having a massage — and time with supportive friends and family is vital in preventing burnout.  If you burn out, you won’t be able to be there for yourself or your loved one.  As they say in the safety announcements on an airplane, you need to put your own oxygen mask on before you can help the person sitting next to you.
  • Join a support group with others who are losing a partner to dementia.  The Alzheimer’s Association has a tremendous wealth of resources to support family caregivers.
  • Speak to a therapist or counselor who understands the process of grief you are going through. Use that time as your own special, sacred time to deal with all of the feelings you are going through, including feelings about other losses and hurts in your life that may be surfacing.

In sum, self-care and being with others is critical as you go through this process.  May you learn and grow as you journey on this road of loneliness and grief.